abernard102@gmail.com
2013-11-09

Summary:

"Efforts to put individual genome sequences and accompanying personal health information online in a freely accessible database just got a boost in the United Kingdom. On 6 November, Stephan Beck from University College London and his colleagues announced the establishment of a British Personal Genome Project (PGP-UK), which will recruit volunteers to provide DNA and health data with no restrictions on their use.
PGP-UK plans to sequence 50 British residents, age 18 or older, in its first year and ultimately hopes to enroll 100,000, Beck says. Some 450 people have already expressed interest, and the group has secured a year’s worth of funding and in-kind sequencing services.
Britain’s PGP is an outgrowth of a project begun in 2005 by genome scientist George Church of Harvard University. At the time, genome data were often freely available, but health information was not because of privacy concerns. That made it difficult for researchers to link gene variants to specific conditions.
Church, however, argued that privacy could not be guaranteed, despite precautions, because of the power of modern computing and analysis methods—a prediction that has been borne out. As an alternative, he and others argued for a more transparent approach, in which individuals volunteer to have their genetic and personal health data posted online, with no promise of anonymity.
Church’s PGP Harvard has so far attracted more than 9000 recruits, 2900 of whom have PGP websites with their health data. Those 2900 have undergone extensive education, including an exam to make sure they understood the 24-page consent form. In addition to genomes, some participants provide tissue for stem and other cell lines ..."